News

An enrolling clinical trial is assessing whether a “booster shot” of a COVID-19 vaccine can improve the immune response in people with scleroderma and other autoimmune diseases who did not respond, at all or optimally, to their original COVID-19 vaccine regimen. The study also will test whether temporarily stopping…

The National Alliance for Caregiving, in partnership with Global Genes, has issued a free guidebook, available online, that offers resources and support for caregivers of children with rare diseases. “The Circle of Care Guidebook for Caregivers of Children With Rare and/or Serious Illnesses” was designed…

Supervised rehabilitation combining a whirlpool bath with active exercises and hand and elbow massages may improve hand and overall function in people with scleroderma, a study from Poland reported. Its findings suggest that a four-week rehabilitation program may be enough for these benefits to last up to six months…

The fecal microbiome — the community of microbes present in stools — of scleroderma patients is more diverse than that of healthy people, according to a Canadian study. The findings also showed that the diversity and abundance of bacterial species in the stools was higher among patients with an abnormal…

Registration is now open for Global Genes‘ 2021 RARE Patient Advocacy Summit. This year’s hybrid event will be livestreamed from California Sept. 27-29, and some seats also are available for attending the event in person in San Diego. “Here you’ll have the opportunity to connect and engage with others…

Sexual dysfunction is common among both men and women with scleroderma (SSc), a review study says. According to the researchers, closer consideration of sexual dysfunction is warranted as it impairs patients’ quality of life. “Paying greater attention to the sexual function of patients with SSc is meaningful because sexual…

High levels of a protein known as CTRP9 appear to indicate worsening lung function in patients with systemic scleroderma (SSc), according to a recent study. The discovery suggests that CTRP9 may be a useful biomarker for the loss of lung function in SSc. Such biomarkers are sorely needed, researchers…

Registration is now open for the 2021 Rare Diseases and Orphan Products Breakthrough Summit, which will be held virtually Oct. 18–19. The event, also known as the National Organization for Rare Disorders (NORD) Summit, brings the rare disease community together to network and discuss developments in treatments and research…

More than 600 people participated in the 10th annual Rare Disease Week on Capitol Hill 2021, held virtually July 14–22, to advocate for the rare disease community. Hosted by the EveryLife Foundation’s Rare Disease Legislative Advocates (RDLA) program, the event brings together community members from across the U.S. to…

Nearly 30% of scleroderma patients have nerve damage outside of the brain and spinal cord — called peripheral neuropathy — and it most frequently appears in the first decade after disease onset, according to a review study. Notably, this frequency is higher than that reported for the general…